Jennifer's Journal

Im all most five months and getting better every day. Still not at 100% but the PT is helping the lymphodema and I gain strength and more stamina each day. My cardio give me toporal just in case after two very stressfully days at work which led to servers palpitations. But I haven\'t had to use it yet. And that is with my eldest son being hospitalized on mothers day with a staph infection. Fortunately he\'s was released yesterday although he is on IV antibotics until the 27th. Trying to keep it together the best way I can.

Yesterday I had my 16 week anniversary. I finally got into physical therapy for lymphademia. That was a challenge. So now I\'m doing that three times a week and then back to cardiac rehab. I found at the end of the week I\'m exhausted. Especially this week. Everytime I finally feel like I\'m doing ok something else happens. My husbands grandfather passed away Wednesday morning so he\'s in Tampa with his mother and siblings. Wally was 93 years old and he had lost hs wife just over a year ago and thankfully he went peacefully in his sleep. I liked him a lot. I feel guilty because I\'m still going through the swelling issue and my husband wanted me to say and go to PT for my breast and my arm. My heart is fine and compared to a month ago my stamina and strength has doubled which is great. I just need to remember that if I overdo I\'m the one that pays the price. One day I\'ll learn.

I\'ve bit a bit busy the last few weeks. Went back to work full time and going to cardiac rehab three times a week. I will also admit to having a bit of a pity party for myself. At 11 weeks post op I went to see my surgeon at the request of the nurses in rehab. . I have been experiencing swelling in my right breast when I use my right arm basically since they drainage tubes were removed. It\'s not always bad but it can get really bad pretty quick. I\'m gaining more mobility I that arm but its a painful process. My surgeon conducted a very thorough exam last Tuesday. He then shook his head and said we had to go to the far right so we didnt disturb what was done when you were 3 ths and im sorry but you have lymphodema. It should work itself out with mild stretching no streangthing exercises. If it doesn\'t in two months I will need to send you to a breast guy. I had already been told my muscular pain would be here for about six months due to the amount of muscle,cartilage and scar tissue they had to go through but I was not expecting this. Last Friday the nurses let me know they went to physical therpy to find out what I should be doing and of course now PT wants to do a evaluation and possibly a lymphatic message. The thought of someone doing this to me is not appealing but I am keeping an open mind. Anything to stop the swelling and pain. When I was at rehab today I was speaking to a very nice 72 year old gentleman who overheard me explaining that I need my prescription redone to the PT which I should have tomorrow. He leaned over and said honey your still breathing, working and mad. Use that anger to push through it and youll be fine. Needless to say I laughed so hard I almost cried. I felt way better and am confident I will get through this. Oh and btw. I went out to dinner over the weekend and wore high heals. Yea for me! Now I\'m bringing them to the office to practice walking in them. I used to be able to jog in heals and I fully intend to do so again. Much love to all who are facing surgery. That\'s the easy part. Recovery is where your temper and patience will be tested.

Well my youngest decided i needed the flu. Alright in his defense he\'s 22 and goes to college caught it and gave it to me. I went to my cardio Monday who finally released me back to wk part time to start. I tell him I\'m not feeling well but I\'m seeing my primary tomorrow. We go on to discuss the swelling I still am having on my right side and tells me that if another four weeks go by and it still hurts I will need to see the surgeon. Anywho so Tuesday I wake up to ove a 100 temp soar throat sweating a d basically feel like I was hit by a truck. My primary said no way back to wk go to bed and gave me Tamiflu. God I hope this goes quick.

I started rehab yesterday. Was home by 11 and asleep by 11:30. The right side of my chest was as swollen as a honeydew. Lots of ice and I finally broke down and took an Advil. Today I went back I the afternoon. I explained what happened and the nurses refused to let me d anything with my right arm. They told me that they wanted to wait until monday and if I was still sore they may want a release from my surgeon. I am seeing my cardio that afternoon and the nurses said good he can call the surgeon. I had the Miniumally invasive and was told by my surgeon that they basically cut through muscle, nerves and cartalidge from my surgery when I was three mths old. Also I have new scar tissue on the very right of my primary incision. I explained this to the nurses who once again stuck to the party line of you had major surgery no rushing. So I\'m back to being a ping pong ball. The good news is that except for the pain in my right chest and arm all of which is muscular I am beginning to feel way better as far as stamina goes. I am praying that my cardio will release me back to work next week. I can bring a heating pad with me and my manager knows that I will be doing rehab and I can work from home as much as I need. So hopefully they will let me.

I had a good day today. I saw my surgeon who assured me that that bump on on scar was nothing but scar tissue and will works itself out. I was also told to use heat when the pain goes into my arm as all the nerves they cut are waking up. I ased if they could be put back to sleep and was told no.... Oh well. also my skin ulcer is clearing up well. I start cardiac rehab tomorrow and everyone tells me I\'m going to feel it. But I\'m really looking forward to it. I want to work on my arm muscles and my stamina and go back to work. Seeing cardio on Monday and hopefully will get blessing for at least part time.

After seven weeks post op and at the end of pnemounia. Hopefully. I finally went to the mall and dinner yesterday and a Costco today. Not going to lie I\'m so tired I can\'t see straight and by the end of dinner last night it felt like I was being stabbed in the shoulder. But it was great being out. Definitely overdid the mall (all I wanted was yoga pants for rehab) but wound up walking from one end to the other twice. I can say that it was mentally good for the soul to be out. Hopefully rehab will get rid of the pain. Jennifer

With information overload before surgery there are a few things I felt that should have been explained but aren\'t. Especially for women. Number one. If you still Mensturate and you go on warfarin you may experience longer cycles. I know I did and when I finally asked the response was well someone your age is not the usual patient and yes this is a side effect and there is nothing we can do about it. Obviously this is not life threatening but I thought I would share so you aren\'t surprised. Secondly if you are like me I had no pain no issue with my cath right until the first day of my period. That day I thought I may have ripped something so i called my doctor who did make me come in just to be sure. No I didn\'t rip anything everything was fine. It was just caused from beginning my period and was horrible the first two days. Heating pad did help On a separate note....if you are a women and have the Miniumally invasive surgery get a bra before surgery. With the normal breaking of the chest bone you need a good support bra to keep your chest together and support for your breasts. With minimumally invasive they cut directly under your breast so any type of compression or anything that may lay on the incision will cause extream pain. Not wearing one will add to breast swelling. I personally bought two supposedly surgical bras and wound up cutting them to make them fit better. Then I went to the barely there cross tanks which help but still compressed the top part of the breat. I finally went and bought cotton semi Demi in a larger cup and have felt much less pain from them. I will be seeing my surgeon on Wednesday and asking if there is a bra specifically designed for this. If anyone knows of one I would love to hear about it.

The good news is that the muscle pain in my chest is approved by more than 80%. The not do good news is that I need to have my antibotics changed as I still have the pnemounia. But I feel better because the pain is going away and I am so looking forward to beginning cardiac rehab next week. Tomorrow is my six week post op anniversary and it looks like I will be eight weeks before they will let me go back to work. But again good news is that I\'m doing a little bit of work by helping my colleges that are helping me while I\'m out and I\'m planning on catching up on email I have over 700 wk related so I\'m looking forward to that. I know sound crazy right. But it helps me mentally to know that I can do this and can help somewhat stay on top of things. Sooo happy the pain is going away.

Hi I just discovered this site after reading Adams book. On Dec 22nd 2011 I had Mitral Valve Replacement with a St. Jude Mechanical Valve. I was born with a severe heart condition and was operated on in Feb. of 1967 so when I became symptomatic of Mitral Stenosis and Afib I was told that I had a unique situation than a complex issue which led to a Redo. By the time of the Redo I had made it perfectly clear that I was done with being unique or complex. I am somewhat of a type A personality so my annoyance combined with fear and a worsening condition did not make me the most agreeable patient. I was also feeling out of control which is something I have never enjoyed. I will say that I am fortunate enough to have a fantastic cardiologist who is not only a great doctor but a great diplomat. His practice partner is also very good and he was the first one to come up with unique and was a champion for me to go to Mayo. His bedside manor is somewhat lighter than my primary Cardiologist and my husband loves him. They worked as a team and reviewed all my new test results and compared them to the last five years of echo\'s. At this point my primary cardiologist said to me..my Valve patients tell me when they need surgery. Your body is telling me its time. However I am not so much of an egoists that I am always right so I want you to see another cardiologist in Miami at UM to have him conduct a review and make independent recommendations. At this time I had already had a Cath and a TEE as well as several Echo\'s and was not responding at all well to meds. I had no symptoms at all until September when I developed pneumonia and could not understand why this was happening to me! So off I went praying for anything other than surgery. My husband (who was a storm trooper and never left my ide during all of this) said that yes I must have surgery and no one at UM was qualified to touch me. He than echoed that I could go to Mayo but Dr. Lamelas at Mt. Siani was the best in the Southeast and he would let him operate on himself. My Primary Cardiologist agreed and pointed out the Miami is closer that MN. Also the Cardio from UM could be my Cardio while at Mt Sinai which meant that they could all communicate about my case before and after. This has turned out to be most beneficial to me as they knew I would have the best chances before and after. My surgery went great. I made it out of ICU in two days. the only issue that I had was a skin ulcer that developed from where the drainage tubes were for four days as I had fluid build up which of course is what caused the worsening of my condition in the first place. The only other issue is that my intubation could not be done through the groin incision and had to be above my right breast. So now I have four incisions. But the main one is where no one will ever see it. and the other three are already so light they will be difficult to see as well. Last week my body decided that I needed to be reminded to slow down and I developed pneumonia and a slight collapse of some small tubes in my right lung. So back to the ER I went. The ER doctor took 12 vile\'s of blood and than just to be sure call my cardio at 1 am to ask if he should keep me. the answer was give her antibiotics send her home and ill see her Monday.Then my Lactate test came back and admitted I was.By Sunday morning My White count was normal as was my lactate core. I was also seen by the infectious disease specialist to make sure that it was not a fully collapsed lung or a SSI or heart infection. He didn\'t like the radiologist report and told me that on Monday they would ask the head of that department to look at the results again and than if necessary rerun the cat scan. On Monday it was determined that my Cardio was right and I was sent home and told no driving, no rehab and bed rest. I already had another post op with my surgeon on Weds for my skin ulcer and of course they said still come and yes please bring the Cat scan. So off to Miami on my weekly visit we went. The wound looks way better and yes the cat shows tat the small section of my right lung had inflated so they agreed bed rest antibiotics and the spirometer 10 times an hour was mandatory. I am feeling much better but the last few days have been difficult. Now my primary concern is still the pain in my left chest. They had to cut through a ton of scar tissue from my previous surgery as well as cartilage. And of course the repair of an axillary artery and conduct Ligation of of left atrial appendage (I believe this is common now to cure the Afib along with the Maze) which did work in my case. The pain is getting better again now that the pneumonia is clearing up and my wound is healing. I am just a little disappointed that I am not driving and now back to work yet. But on the other had I am so grateful to still be alive and am thankful for my entire family and extended family for all of their love and support through this entire journey. Sorry this update took so long but I wanted to tell the story this far so that if anyone else reads this and happens to be going through something like it they will know they are not alone